June 23rd, 2012
I decided to re-activate my blog one day before a FULL year had passed without writing something. You’re welcome.
This has been… without question… the worst year of my life. Especially the past few months. I don’t even know where to begin!! HOLY SHIT.
When I last left you, I had just hired Chrissy, and Thalia lived upstairs and all was well in the caregiver area. Now, Thalia has moved (waaaah! She still comes, but it’s NOT the same as having someone upstairs) and Chrissy left in May to spend the summer in Thailand and then move to Ontario. She was a GREAT asset this past year, but she’s gone. So, I hired this chick named Sherri who seemed very cool and although red flags popped up all over the place, I chose to ignore them because she actually worked great with me, and I’m an idiot. So I should not have been surprised when during one of my several recent hospital visits she texted me that she was stuck in BC because of the rain, and would let me know when she was on her way. I know one highway was closed for one night, but it wasn’t the only way out, and when I got home, couldn’t reach her by any of the numbers I had for her and she chose not to show up for work or call until 4 days had passed, I sorta knew that was over. Thankfully Thalia was able to cover for her. But when she finally called and acted like nothing was wrong, I informed her she was being replaced and her final cheque was in the mail. *shiver*
She has yet to be replaced… I’m waiting on a lady nearby I’m 99.9% sure I want to hire, but she needs another week or so. And since my hospital visits resulted in my being on an indwelling foley catheter for a few weeks instead of doing the in/out thing, I called Nancy and asked her if she could fill in for a couple weeks. Luckily she is able to. So Nancy is back for the time being.
My bladder and everything to do with it has been a living hell for the longest time now. Last year I started the in/out catheter thing several times/day so my bladder could be properly emptied. But I still got frequent UTIs and have been on and off every antibiotic known to man (yes, I take D-Mannose and natural stuff… more now than ever). After several visits to a uro-gynocologist and tests and whatever I needed to do, I finally went for Botox on May 9. Now, what Botox in patients with MS related neurogenic bladders is supposed to do, is relax your bladder so you don’t get the urge to pee constantly and your bladder is able to hold more before you feel the urge to go. In me, however, NOTHING EVER WORKS LIKE IT’S SUPPOSED TO, so I ended up with an antibiotic resistant UTI, a constant urge to pee and completely unable to, calling Thalia at 2:00 in the fucking morning to cath me because I had to go SO BAD and couldn’t, hospital visits, and finally now an indwelling catheter. At least the botox has relaxed my bladder enough that I can wear the catheter without getting painful spasms. I don’t know how long it will stay in… I actually want to keep it until the botox wears off and then get a permanent Supra-Pubic catheter put in (it goes right into your bladder via a surgery because a foley will be too painful then) because I GIVE UP. I HAVE HAD IT. My bladder has caused me too much pain, tears and exhaustion over the past couple of years. I’d rather be attached to a bag of pee. I don’t fucking care. It’s just too hard. Plus, with the catheter I’m able to drink more, and past supper, and try home remedies for UTIs I’ve read about, and my urine has never been so clear.
I could go on and on about my health. MS SUCKS. It’s a rotten battle you cannot win and fighting is so hard. I have gone from being able to walk up the hall and back to not even being able to do that in the past year. I stay in bed until home care comes in the morning (don’t even get me started on home care!!) and can get me out of bed and wheel me out here. I’ve gone from showering every day, to 3 times/week because it’s so hard, and I’m going through the paperwork process to get a lift installed in my bathroom to get me out of the shower. It is just too hard now… standing up is the HARDEST thing I do, and needing to do it after a shower without my leg brace on, when I’m cold and wet is near impossible. I’m sort of doing an up-pivot-into wheelchair thing from the shower bench with my home care worker’s help, but it’s getting harder and scarier every time. At bedtime I try to walk to my bed with my brace still on, but often I can’t do it and out comes the wheelchair.
I can’t get around my apartment AT ALL… I mean, it’s been a long time since I really could, but it wasn’t that long ago that I could still grab something from the fridge or cupboard if I HAD to. Like, if a chocolate craving hit and I knew I had Reese’s Peanut Butter cups on the freezer door. Now I can’t even do that… no secrets here.
I’m so fat. I can’t move, (although I still do Range of Motion with home care every morning and use my Chi Machine for 30 minutes every evening) so everything I eat sticks to me. And I’ve always had a weight problem. I don’t eat nearly as much crap as I used to, but I’m bigger than ever. God. I remember going through my 2010 receipts and seeing pizza, pizza, pizza, KFC, crap crap crap allll the time, when I was more independent and ordered in a lot. I can’t eat like that now… I mean, someone has to get the door and accept the delivery so I’d be ASHAMED and embarrassed to do that so often now (ever had food issues or an eating disorder? I know you get me). I’ve had the same chocolate bars in my freezer for months ’cause I’m afraid to ask for one. I can’t get them, and I know my caregivers would give them to me, because who the Fuck can say no to someone in my position, but goddammit. My life sucks so bad that eating crap is one of the few joys I have left. But being this fat when moving is so damn hard isn’t good, either. Having food issues and believing eating crap is a “joy” is only one of my problems, and I’ve had it longer than MS, but ohhhhh how it complicates things now.
I WANT A DO OVER.
I’m going to just upload this. I’m too tired to keep typing. Still one-handed, still no Frogpad’s being made for people like me. I still have my gorgeous kitties Pita and Pepper and will upload photos next time. My lovely friend Emma was in town last month and I got to see her, too. And Peter Katz. And my Polyboys. It’s not like there hasn’t been ANY good this past year. My brother even got married! But today was about just SOME of the bad and I need an outlet. So I need to get this blog up and running again. TTYL.